switching from Keppra to Depakote or possibly another medicine

[Amy]

I have posted on here a couple of other times. My daughter had her first tonic clonic seizure Dec. 3 and has had 4 more since, always between 4 and 6 AM while asleep. She has been on Keppra so far, and it doesn't seem to be working. In fact, in the last few weeks, she has also started having what we thought were absence seizures but now after talking with her doctor on Wed. realize that they are actually partial complex seizures. She starts off staring and pausing whatever she is doing for several seconds and then goes into a phase where she is conscious but does a strange sort of giggle that she can't control. The worst was the other day when she fell down the stairs at school. She says she remembers being at the top of the stairs and then at the bottom, but nothing in between, so I think she most likely had a seizure. Anyway, she is now at a pretty high dose of Keppra and the doctor reluctantly let her increase to where she is right now. He really wanted to switch her to Depakote, but I am very hesitant because of the potential side effects which seem scarier than those of Keppra. (She really hasn't had any significant side effects so far on Keppra, especially since starting vitamin B6). The doctor said that he's willing to keep her on the Keppra a maximum of one more month if she is still having seizures and then after that he wants to go ahead and try the Depakote. I'm not sure why he wants to try Depakote versus other medicines, he basically just said it was because of her seizure types. So, my two questions are: Has anyone had success with Depakote (or a bad result) in a similar case? Has anyone with these types of seizures had success with a different medicine? If so I could try to suggest it to her doctor. Thank you!

      

[Rebekkah Sutherland]

My daughter was on Depakote. She was doing well no bad side effects. After a year on it though we found out that it was doing nothing for her atypical petit mals. Only masking them. When we did her VEEG she was still having 3 to 5 seizures an hour. She is now on Lamictal so far so good just alot of fit throwing we didnt expect. Will be praying yall figure something out that will help your daughter, and put you and your Dr. to ease.
God bless

[nicole marquez]

My son was diagnosed with absence seizures when he was 2 years old the very first medicine he was put on wad depakote. His neuroligist told us it was one of the most used for his type of seizures and had the least amount of serious side effects? My son did amazing on it & he was seizure free for four years. The only side effect that we ever saw was tiredness. After the seizures came bk the doctor added another medicine and are still trying to tweak with different medicines to figute out what his cocktail (for lack of a better term) really is. Now the neuroligist has just put Depakote back in his regimen after almost 2 years of being uncontrolled and once again its doing wonders..compared to all the other meds we've tried!! I knw I may have given lot more info then u needed but I just think its best to know what your possibly facing, but always trust "your Mommy" instincts cause all kids are different!! God bless & much luck:)

[cathy]

Amy, We are in the exact same boat, but my daughter's doc seems to be going more towards topamax. She mentioned the depakote, but didn't seem to favor that one. She hasn't had a seizure since Sept ( when she had 3) that we know of, but her EEG is still fairly abnormal and she is on a high dose of keppra ( 1000 mg 2x a day) she is 9 yrs old and 70 lbs. We tried the lamictal, but she got a fairly bad rash so I guess that ruled out another med that has that side effect also. They are finally wanting to do a 24 hr EEG which I thought maybe would have been a good idea a long time ago since her activity increases a lot during drowsiness and sleep and since they only sleep 10 to 15 minutes they want to see what happens when she is in a deep sleep. How old is your daughter?

[Amy]

Thank you all for your replies, makes me a little less scared about the Depakote. Cathy, my daughter is 10 years old and big for her age--almost 5 feet tall and around 100 pounds. She is on 750mg of Keppra in the morning and 875mg in the evening, which the doctor described as a high dose. However, sounds like it's really not even close to the maximum based on your comment. Makes me wonder why my daughter's doctor wants to give up on the Keppra already. In fact, he said, "Now that she has failed this drug...." referring to the Keppra. I personnally would prefer to go a little higher on Keppra (within reason of course) rather than give up on it and start from square one with a completely new drug that's a complete unknown. She's having blood drawn today to test the level of the Keppra and to see if she's a high metabolizer. Hoping we find a resolution soon.

[cathy]

Amy, We 've done the blood levels and they say they won't go any higher.They told me that after a certain amount the keppra loses its effectiveness. My daughter was diagnosed 2 1/2 years ago and has had about 9 seizures. They wanted to switch her way back in Sept, but as I said before, she got the rash from the lamictal. Her EEGs are all different, but all abnormal. The activity seems to move around all over the brain. At her very first one she had generalized spikes as well. That's why they are finally doing the 24 hour one, to get a better idea of what exactly is going on. If it looks similar to her last one the doctor said we will just add clonazepam at night. If she has a large amount of activity while she sleeps, then they want to switch completely.....she is always tired, they think something may be going on while she sleeps...sounds like she is really up there compared to your daughter, no wonder they want to switch, but I'm with you, worried about switching and the side effects..

[Amy]

Cathy, since your daughter has been diagnosed for 2 1/2 years and mine has been for less than two months, it worries me that she has already had 5 tonic clonics and a lot of partial complex seizures. ):  When she was first diagnosed, I guess I had it in my mind that it would be simple to treat--just give her the medicine and she'll be fine. Now I am gradually realizing that this journey may be more difficult and complicated than I originally thought.....I hope that all of the kids with epilepsy can eventually find the treatment that works for them and helps them to have a good, normal life.

[Tonia Addison]

Hi Amy,

Bless your heart! I know this road is a nightmare for any parent and/or child who has to deal with it. The constant worries and wonderings can drive us crazy. My son is 18 years old and has dealt with epilepsy since he was 6. At one point, we had used literally every medication out there for seizures. Right now he is on Topomax and has just started (in November) a low dose of Keppra. The bad side effect of Topomax is it causes sort of a language barrier. Devan knows what he wants to say but sometimes, it takes him a couple of minutes to get his point/thoughts out. It can cause some issues with memory but once the medication is stopped, the memory and verbalization issues will go away. We are working on getting him off of the Topomax and on Keppra only. Now, he was on Depakote years ago and it did great for a long time as far as it goes for controlling his seizures. We ran into 2 problems with it. One - weight gain and the second hallucinations. We were in the doctor's office one time and he asked me if I saw the angel on the wall. I said no honey where? He said Look mommy, it's a bleeding angel. Obviously, I called his neuro immediately and we made a change in his meds.

When it comes right down to it though, other's stories are going to terrify you. It comes down to whatever works for your child. Have you ever heard of the VNS therapy? Devan has one and it has truly helped him over the years. It's not a cure but it has helped in controlling the length of his seizures.

If I can be of any further help, let me know. You're in my thoughts and prayers.

Tonia

Kentucky

[Amy]

Thank you Tonia for your supportive words, thoughts and prayers. I am praying for Devan, too. Hopefully Keppra will work for him. From what I have heard so far, every kid is different, so it could be the right one for him!

[Dorothy Martin]

Amy I was in your boat not that long ago. We started keppra after her 3rd grand mal in 18 hrs. She continued to have grand mals alleys every other day and we upped keppra up to max dose of 1500mg twice a day. She did good for a week then teNd mals again so we added another med to it. Then upped that to max and added another and then another. We went to Cleveland clinic and nothing seemed to help. Finally we had the vns and I have to say I have not seen a grand mal since. Only partial seizures. My daughter is very small for her age and she has not had many side effects to meds. Like your daughter they now want to add depakote to her meds since her eeg shows she has continuous spikes. Amy you will find a balance and things will get to a new normal. I never thought I would say I am getting used to it but I am. Doesn't make me happy to see her seizing but I can "handle" things better now.

[Denise Lum]

My daughter is 11 and is on Depakote for the second time.  It has been working well.  Every child reacts to every drug differently.  We have been on so many in the last 6 years I have lost count.  Depakote seems to be the one we always end up back on after we try something else.  Keppra didn't work well for us.  She became very violent. We have even had an allergic reation to Lamictal, that was scary. Depakote is worth a try if you are needing to try a different medication. The side effects have been nothing compare to all the others we have been on. 

[Irene Flemming]

Amy,

My son was diagnosed over nine months ago,he was 16 yrs.old.And Depakote is

the only medication that he has been on.He is 17 yrs.now,.. and the only side effect for

him is weigh gain.We have put him in physical therapy with weigh management 3x's a

week.But he has been seizure free ever since.

His seizures only come at night after 9:00pm(my son says,they were a watch)He is taking the

generic version Divalproex Extended release 500mg.One in the morning another at bedtime.

But as we know no other side effects, but my son also has Asperger's so he also has other issues

which concerned me taking ANY MEDICATION.

Take Care

Blessings to you & your daughter

[Margaret Mary]

Amy:  When my 11-yr-old son tried Keppra, it actually seemed to cause complex partials.  He has absence seziures and had one t/c in his whole life,  but as the dosage of keppra increased he began having daily complex partials and 5 t/cs in a month.  Once he was off the keppra, there were no more complex partials and he has not had a t/c in 8 months.  He does still have 1 or 2 absence a day. He is now on lamictal.  I am praying for your daughter and that you find a medication that works.